Archives of Gynecology and Obstetrics (2022) 305:299–311

https://doi.org/10.1007/s00404-021-06109-4

REVIEW

Sensory challenges experienced by autistic women during pregnancy

and childbirth: a systematic review
Priscilla Samuel1 · Rui Ying Yew1 · Merrilyn Hooley1 · Martha Hickey2 · Mark A. Stokes1,3

Received: 9 September 2020 / Accepted: 28 May 2021 / Published online: 4 June 2021
© The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2021

Abstract
Purpose The aim of this systematic review was to identify challenges faced by autistic women during pregnancy and birth
due to sensory issues or other features of Autism Spectrum Disorder.
Methods A systematic search of literature was conducted using Medline, PubMed, Embase, PsycINFO, CINAHL, MIDIRS,
ProQuest Dissertations and Theses Global, and Open Access Theses and Dissertations. Eligible studies addressed autistic
women’s pregnancy or birth experiences, and were assessed for methodological quality.
Results The search generated 2656 results, with six meeting inclusion criteria. Data from 427 autistic participants were
extracted from four qualitative and two quantitative studies for synthesis.
Conclusion We found that the literature was exploratory and lacked focussed research questions addressing sensory issues
in pregnancy. Sensory challenges were, however, identified as a key finding in all qualitative studies. Other challenges faced
by autistic women during pregnancy and birth included communication issues in healthcare settings and lack of appropri-
ate information and supports for pregnancy and birth. Implications for health professionals and challenges associated with
research in this area are discussed.

Keywords Autism spectrum disorder · Pregnancy · Maternal experience · Birth · Sensory

Autism Spectrum Disorder (ASD) is a neurodevelopmental
disorder characterised by difficulties in social communica-
tion, repetitive and restrictive patterns of behaviour, inflex-
ibility and difficulty coping with change, and abnormalities
in sensory functioning [1]. Sensory function abnormalities
(commonly referred to as sensory sensitivities) are hetero-
geneous within the autistic population,1 and can occur in
all sensory systems—auditory, vision, gustatory, olfac-
tory, tactile, and proprioceptive [4, 5]. Sensory function
abnormalities can be broadly classified into two categories:
hyper- and hypo-responsiveness to sensory input. Hyper-
responsiveness describes heightened, or excessive sensitivity
* Mark A. Stokes
mark.stokes@deakin.edu.au
1
School of Psychology, Faculty of Health, Deakin University,
1 Gheringhap St., Geelong, VIC 3220, Australia
2
Department of Obstetrics and Gynaecology, Royal Women’s
Hospital, University of Melbourne, Grattan Street, Parkville,
VIC 3010, Australia
3
School of Psychology, Faculty of Health, Deakin University,
221 Burwood Highway, Burwood, VIC 3125, Australia
to sensory input in which everyday sensations, for exam-
ple, bright lighting, or light physical touch, can be a source
of discomfort and distress [5–7]. Hypo-responsiveness to
sensory input describes below-normal sensitivity to stimuli,
which can present as individuals not noticing, or responding
slowly to sensory input, and/or actively seeking out sensory
stimulation [6, 7]. Processing of internal bodily sensations
such as temperature, pain, and hunger appears to also be
disrupted resulting in both hyper- and hypo-reactivity [8, 9].
The majority of research investigating sensory atypicali-
ties in ASD focuses on children [7], although sensory issues
persist across the lifespan, with research indicating presence
in 90% of autistic adults [5, 6, 10]. Over-responsiveness in
particular can impact greatly on well-being and functioning
in adults; for example, by contributing to elevated rates of
anxiety [11, 12], in addition to stress and avoidance of daily-
life activities associated with aversive sensory stimuli [13].
Adults within the autistic community have advocated for
1
Identity first language (autistic person) is more often preferred
over person first language (person with autism) by individuals on
the autism spectrum [2, 3] and will be used throughout this article,
although it is acknowledged that this does not represent the prefer-
ence of all members of the autism community.

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Vol.:(0123456789)
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more research to further understand the nature of sensory
challenges and ways that autistic adults can manage them
[14].
The prevalence of ASD is currently estimated at 1 in 54
[15] with a sex ratio of 1 female to every 3 males [16]. Evi-
dence suggests that ASD manifests differently in males and
females [17, 18], and that this might contribute to an under-
diagnosis of females [19]. To date, autistic females have
been under-represented in ASD research [20, 21] resulting
in a lack of research investigating the specific experiences
of autistic women and the factors that impact their qual-
ity of life [19, 22]. There is evidence that autistic women
report more sensory sensitivities than non-autistic women
[23], and are more prone to sensory symptoms across the
lifespan than male counterparts [24, 25]. Given this, it is
of particular importance to understand the experience and
impact of atypical sensory symptoms in autistic women
during the significant physical, hormonal, and emotional
changes that occur throughout the lifespan. A small corpus
of research has explored the potential amplification of sen-
sory challenges experienced by autistic women during major
developmental transitions of menarche and menopause, and
during menstruation throughout adulthood.
Research addressing menarche and menstruation chal-
lenges largely relies on observer reports, and therefore is
limited in revealing subjective sensory experiences, but sug-
gests girls and women on the autism spectrum face unique
challenges in addition to the normative range of physical
discomforts and psychological experiences associated with
menarche and menstruation. Carer reports include worsen-
ing of ‘autistic behaviours’ [26], increases in repetitive, self-
injurious, and aggressive behaviours during menstruation,
and elevated rates of pre-menstrual and dysphoric symptoms
relative to non-autistic populations [26–28]. Autistic wom-
en’s self-reported experiences of post-menarche menstrua-
tion include increases in ‘sensory overload’, and increased
difficulties with filtering noise, communicating with others,
anxiety, and ‘meltdowns’ [29]. The experience of meno-
pause in autism has only been the focus of one study to
date, with initial findings suggesting that both heightening
of existing sensory sensitivities and the emergence of new
sensitivities can occur during menopausal transitions; both
of which can significantly impact daily functioning [30].
Pregnancy is a critical point in life for many women.
Pregnancy not only involves sharing one’s body with another
being, but also considerable hormonal, and physiological
changes, of which there is significant heterogeneity in type,
severity, and predictability. A wide range of physical dis-
comforts associated with body changes can occur in the
general population across the course of pregnancy [31–33]
which can alter levels of distress and well-being [33, 34],
and may have implications for mental health [31]. These
physiological and hormonal changes are also commonly
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associated with changes to sensory experiences, particu-
larly with respect to smell [35] and taste [36] in the first and
second trimesters, including changes in liking [37], aversion
and disgust responses, and perceived hypersensitivity [35,
38]. The normative range of physical discomforts associated
with body changes during pregnancy may be exacerbated for
autistic women who experience sensory difficulties, and for
whom typically innocuous sensations such as sweating, dif-
ferent textures of clothing, gentle physical touch, or sounds
in the environment, can be experienced as anxiety provok-
ing, overwhelming, and even painful [39, 40]. It is unclear
how pregnancy is experienced by women who present with
atypical sensory processing.
Pregnant women endorse a range of attitudes towards
sharing their body with another being. While some women
gain a sense of comfort from sharing their body, others can
perceive the experience as one of being invaded, or associ-
ate the experience with a loss of control [41, 42]. Feeling
one’s baby move is appraised as a positive and uplifting
experience by mothers [43], but we suggest that this unique
somatic experience could be a challenging sensory experi-
ence for some autistic women. Moreover, the appraisal of
fetal movement may have implications for pre-natal attach-
ment, which is strongly associated with the extent to which
mothers perceive fetal movement [44].
Pregnancy is a time of significant physical and hormo-
nal change and transition which can pose many challenges
to women. How well women adapt to and cope with these
challenges can have impacts on their well-being and the
health of their child. Understanding pregnancy experiences
for autistic women is important to ensure that women can
access appropriate interventions and care to support their
own and their baby’s well-being. Despite the importance
of this topic, there is little literature specifically exploring
the experiences of pregnancy in autistic populations. The
objective of this review was to systematically review litera-
ture which addresses pregnancy and birth experiences of
autistic women, to determine what is known about sensory
challenges and body change issues. The questions that this
systematic review specifically sought to address were: 1)
what challenges do autistic women experience during preg-
nancy and birth, and 2) how do health professionals adjust
their practice for autism.
Method
Search strategy
Six databases were searched for published academic litera-
ture (PsycINFO (via EBSCO), MEDLINE Complete (via
EBSCO), PubMed (via PubMed), CINAHL Complete (via
EBSCO), Embase (via Embase.com), and MIDIRS (via
Archives of Gynecology and Obstetrics (2022) 305:299–311
Table 1  Search strategy Concept
Autism
Women
Pregnancy and birth
Experiences
*Truncation
Ovid)). Two additional databases, ProQuest Dissertations
and Theses Global and Open Access Theses and Disserta-
tions, were utilised to identify unpublished research. Search
strings were created by combining different permutations of
the concepts Autism, Women, Pregnancy/birth, and Experi-
ences. The search was not limited to ‘sensory experiences’
to ensure capture of literature that may have incidentally
reported sensory experiences in autism during pregnancy.
Search terms were piloted in Medline, and then used to
conduct the search across eight databases between May and
August, 2020. Search terms relating to the postnatal period
were included to expand the scope of the search and cap-
ture any relevant findings. Table 1 shows an example search
string. In each of the six databases addressing published
literature, subject headings specific to each database were
included in each search string, and titles and abstracts were
searched. Only abstracts were searched in databases of the-
ses and dissertations. English language limiters were applied
in all databases.
Eligibility
Papers were included if they met the following criteria: (a)
they addressed pregnancy or birth experiences, (b) partici-
pants included autistic women, (c) data of autistic partici-
pants could be separated from data of other participants,
and (d) the study was a primary research study. Studies were
not limited by design to capture all possible research on the
topic.
Data extraction and quality assessment
Studies were screened in two stages. The first and second
authors independently screened all titles and abstracts to
exclude articles which did not address pregnancy or birth, or
autistic women’s experiences. Conflicting decisions arose on
20 papers (1.43%) and 100% agreement was reached through
301
Terms
Autis* OR Asperger* OR ASD OR “Autism Spectrum Disorder*”
AND
wom?n OR mother*
AND
pregnan* OR maternal OR perinatal OR prenatal OR prepartum
OR antenatal OR birth* OR peripartum OR postpartum OR
postnatal OR maternity OR labor OR labour OR obstetric* OR
childb* OR puerperium OR intrapartum OR delivery
AND
experience* OR sensory OR sensitiv* OR feeling* OR “patient
experience* OR “patient perspective*” OR percep* OR reflect*
OR interview OR “focus group*” OR qualitative OR quantita-
tive OR “pregnancy experience*”
discussion of these records. The first author screened the full
text of remaining papers and manually extracted information
addressing participant descriptives, study design, and study
outcomes. Quality assessment of each study was under-
taken independently by the first and second authors. Mul-
tiple critical appraisal tools were used due to the range of
study designs. Quantitative studies were assessed using the
20-item Appraisal Tool for Cross-Sectional Studies (AXIS)
[45]. Qualitative studies were assessed using a 10-item Qual-
itative Checklist [46], with the exception of Rogers et al.
[47] which was evaluated using a 10-item tool designed for
case study designs [48]. Lower quality studies were included
in the final analysis and less weight was placed on the inter-
pretation of the findings.
Results
Study characteristics
Figure 1 shows an overview of the study selection process.
A total of 2656 results were identified, with 1402 remaining
after duplicates were removed. Six studies met eligibility
criteria and were included in the final analysis; reasons for
exclusion are outlined in Fig. 1. Four of these [49–52] were
at low risk of bias, meeting most critical appraisal items.
Two papers [47, 53] were at higher risk of bias, mostly due
to insufficient reporting of methodological and data analy-
sis procedures. One unpublished thesis was included [49]
and the remainder were published in peer-reviewed journals
between 2014 and 2020. Four studies, including one case
study, used qualitative methods to investigate the experi-
ences of pregnancy, birth, and/or parenting. Quantitative
studies utilised surveys to compare autistic and non-autistic
women’s experiences of healthcare [50] and motherhood
[52].
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Fig. 1  PRISMA diagram of
study selection process
Participant characteristics
A summary of the studies is provided in Table 2; qualita-
tive findings are reported first and organised by relevance to
pregnancy. Data from 427 autistic participants were included
across all studies. Most participants (85.7%) resided in Aus-
tralia, the UK, USA, or Canada. Data about the ethnicity
of participants were only reported in two qualitative papers
with small sample sizes [49, 51]; of these participants, 93%
(n = 27) were white. A total of 387 autistic participants
participated in two quantitative studies. All participants in
Lum et al. [50] and 66.2% of participants in Pohl et al. [52]
reported having a formal diagnosis. All self-identified par-
ticipants in Pohl et al. [52] scored higher than a cut-off score
of 6 on the AQ-10, indicating a high likelihood of Autistic
traits [54].
Forty participants provided qualitative data; their ages
ranged from 22 to 65 years. Thirty-six of these participants
(90%) reported that they had received a formal diagnosis of
an Autism Spectrum Disorder from a health professional,
with the remaining participants identifying themselves as
self-diagnosed. No measures were taken to separate reports
from self-diagnosed participants and no use of screening
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tools for ASD traits was reported. Three of the four qualita-
tive studies were retrospective with respect to participants’
pregnancies. There was significant variability in the duration
of time, since the participants had given birth to their last
child with participants in one study giving birth to their last
child between 2 and 17 years prior [49], and in another study,
33% participants had given birth in the last 5 years, while
17% of participants had given birth more than 20 years ear-
lier [51]. Only one study, a prospective case study, included
a participant who was pregnant at the time of the study [47].
The participant first contacted the researchers when she was
6 months pregnant, and provided narrative data until shortly
after she had given birth.
Sensory and body change issues during pregnancy
Only the qualitative studies explored sensory and body
change issues with participants, with each finding that sen-
sory challenges contributed to discomfort, distress, or anxi-
ety in many participants, and in some cases impacted on par-
ticipants’ ability to communicate with others. Participants
reported that during pregnancy, they experienced heightened
sensory sensitivities, in particular, to light, sounds, touch,
 Table 2  Summary of studies
Author Country Method Design Sample size (mean age) Outcomes studied Findings relating to Effect size Quality assessment
pregnancy and birth

Burton (2016) [49] UK Qualitative Semi-structured inter- 7 (35.1) Autistic women’s experi- Sensory experiences: – 10/10
view ences of pregnancy, Heightened sensory (CASP)
birth, and parenting experiences during
pregnancy, particularly
sensitivities to smell,
hearing, and touch
Sensory challenges in
pre-natal and medical
environments—hyper-
sensitivity to lights,
sounds, being touched
Negative experiences in
medical settings:
Being touched or exam-
Archives of Gynecology and Obstetrics (2022) 305:299–311

ined without permis-

sion
Lack of control and
explanation of medical
interventions
Experiences in medical
settings more positive
when:
Consistency in staff
Time taken to build
relationships
Collaborative approach
between staff and
mothers
Hospitals allowing
partners to stay with
mothers as advocate

13
303
 Table 2  (continued)
304

Author Country Method Design Sample size (mean age) Outcomes studied Findings relating to Effect size Quality assessment
pregnancy and birth

13
Gardner, Suplee, Bloch, USA
& Lecks (2016) [53]
Rogers, Lepherd, Gan- Australia Qualitative
guly, & Jacob-Rogers
(2017) [47]
Qualitative Questionnaire 8 (39.0) Pregnancy, childbirth, Prenatal experiences: – 4/10
and early postpartum Difficulties processing (CASP)
experiences and needs the sensations associ-
of women with Asper- ated with pregnancy
ger syndrome Enhanced sensitivities
to touch, light, sounds,
smell, and interaction
Negative sensory experi-
ences associated with
pre-natal check-ups—
examination room
lights, sensations on
belly including being
touched and ultrasound
gel
Intrapartum experi-
ences:
Negative experiences
with lighting, smells,
and sounds
Perceptions of having
little control over own
actions and the envi-
ronment
Narrative Case Study 1 (26.0) Issues for women with Health carer commu- – 4/10
high functioning ASD nication and service (CEBMa)
during the perinatal difficulties
period Sensory stress:
New sensory distur-
bances towards end of
pregnancy
Pre-existing sensory
experiences exacer-
bated during pregnancy
– source of anxiety
Heightened sensory
experiences (visual and
touch) during pre-natal
examinations and birth
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 Table 2  (continued)
Author Country Method Design Sample size (mean age) Outcomes studied Findings relating to Effect size Quality assessment
pregnancy and birth

Donovan (2020) [51] USA Qualitative Semi-structured inter- 24 (42.6) Autistic women’s experi- Communication dif- – 10/10
view ences of childbirth in ficulties with medical (CASP)
acute care settings staff during labour:
Communicating levels
of pain and anxiety,
advocating for self
Being misinterpreted
due to deficits in social
skills and non-verbal
communication, and
misinterpretation of
behaviours occurring
due to sensory issues
Difficulty understanding
Archives of Gynecology and Obstetrics (2022) 305:299–311

and interpreting com-

munication from nurses
Stressors associated
with labour in acute
care setting:
Lack of control over
environment and own
body
Experiencing intense
pain – leading to “shut
down” and overwhelm-
ing coping strategies
Feeling overwhelmed
and scared by unfamili-
arity of environment
Sensory issues: Dif-
ficulty tolerating lights,
sounds, smells and
tactile stimuli leading
to increased anxiety
and/or “shut down”

13
305
 Table 2  (continued)
306

Author Country Method Design Sample size (mean age) Outcomes studied Findings relating to Effect size Quality assessment
pregnancy and birth

13
Pohl, Crockford,
Blakemore, Allison, &
Baron-Cohen [52]
Lum, Garnett, &
O'Connor (2014) [50]
UK Quantitative Cross-sectional survey ASD = 355 (42.7) Perinatal and early moth- Compared to non-ASD R2 = .02 17/20
Non-ASD = 132 (44.6) erhood experiences of group, autistic partici- R2 = .02 (AXIS)
autistic and non-autistic pants were: R2 = .03
mothers More likely to experience R2 = .001a
antenatal depression
More likely to experience
postpartum depression
More likely to endorse
that labour and delivery
(or what is involved in
a C-section) was not
explained in a way they
could understand,
No differences between
groups in:
Attended antenatal
classes
Australia Quantitative Cross-sectional survey ASD = 32 (#) Healthcare experiences Compared to non-ASD ηp2 = .20 14/20
Non-ASD = 26 (#) of women with and group, autistic partici- ηp2 = .25 (AXIS)
without high function- pants experienced: ηp2 = .07 a
ing ASD Information and support ηp2 = .04 a
services for pregnancy
were less likely to be
appropriate to needs
More challenges com-
municating pain, con-
cerns, or needs during
childbirth
No differences between
groups on:
Managing medical
appointments and
procedures during
pregnancy
Appropriateness of
information and sup-
port services during
childbirth

CASP = Critical Appraisal Skills Programme, Qualitative Checklist; AXIS = Appraisal tool for Cross-Sectional Studies (AXIS tool); CEBMa = Center for Evidence-Based Management
(CEBMa), Critical Appraisal Checklist for a Case Study
#
Insufficient information provided
a
Finding was not statistically significant
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Archives of Gynecology and Obstetrics (2022) 305:299–311
and smell [47, 49, 53]. The two lower quality studies pro-
vided more detailed descriptions which included: disliking
the feeling of wind upon one’s face, describing that ‘clothes
hurt’, feeling ‘spikey and itchy’ when in bed, and disorien-
tation or dizziness caused by bright lighting [47, 53]. Par-
ticipants in Gardner et al. [53] described avoiding certain
environments due to sensitivities to noise, and difficulties
with filtering out sound making it challenging to following
conversations. One participant described that ‘movement
inside felt like an invasion of privacy’. Negative sensory
experiences associated with pre-natal environments and pro-
cedures were identified across each of the papers, including
disliking the feeling of being touched during examinations,
the sensation of gels applied for fetal heart measurements,
and bright lighting in examination rooms [53]. With respect
to birth, all four qualitative studies reported distressing
sensory experiences in the hospital environment, including
lighting, sounds, smells, and tactile stimuli. Participants
variously reported that these sensory experiences increased
their anxiety throughout childbirth, impacted on their ability
to communicate their needs to medical staff, and contributed
to ‘shut down’ [51].
Other pregnancy experiences
Autistic participants were less likely than non-autistic par-
ticipants to endorse that information and supports for preg-
nancy were appropriate for their needs [50] and were less
likely to endorse that ‘the process of birth was explained in
a way [they] could understand’, in spite of there being no
differences between groups on antenatal class attendance
[52]. Both groups in Lum et al. [50] reported neutral levels
of satisfaction with the appropriateness of information and
support services during childbirth and their ability to man-
age additional medical appointments. Although the autistic
women reported lower levels of agreement on these items,
the difference was not statistically significant. However, our
analysis shows that the effect size was comparable to other
differences reported, but the study lacked power to test this
effect. Autistic women were more likely than non-autistic
women to experience antenatal and postnatal depression [52]
and reported more challenges communicating pain, concerns
and needs during childbirth than non-autistic women [50].
Social-communication difficulties associated with non-
verbal communication and literal communication styles led
to misunderstandings between mothers and medical staff
during labour which impacted on the birth experience; for
example, participants reported that their blunted outward
expressions of pain may have led to nurses underestimating
their level of pain [51]. Some participants were uneasy com-
municating about pain and anxiety to nurses, due to the ‘pri-
vate’ nature of these topics, while others perceived that med-
ical staff misinterpreted self-stimulatory behaviours such as
307
hand-flapping and rocking, which some autistic individuals
use as a coping strategy [51]. Women’s perceived lack of
control over their own bodies, actions, and the environment,
was identified as a source of distress during labour in three
studies [49, 51, 53]. More positive experiences in healthcare
settings were associated with greater staff consistency, staff
taking time to build relationships and using a collaborative
approach with mothers, and allowing partners to stay over-
night in hospital to act as an advocate [49].
Methodological approaches and challenges
The two quantitative studies used surveys to explore partici-
pant experiences. Lum et al. [50] piloted a scale to assess
healthcare experiences, which contained a 5-item maternity
scale. Several items in the main scale addressed sensory
experiences in healthcare settings, but were not specific to
pregnancy or childbirth, and so, results are not included in
this review. A survey conducted by Pohl et al. [52] focussed
primarily on motherhood experiences, but included three
items relevant to pregnancy or childbirth experiences.
Qualitative methods diverged between studies with use
of semi-structured interviews [49, 51], narrative case study
[47], and interpretation of data which had been obtained
through a previous questionnaire [53]. Various analytic tech-
niques were used to distil themes including Interpretative
Phenomenological Analysis [49], Interpretive Description
[51], and Grounded Theory [53]. Two studies used peer
review as a quality control to assess grouping of themes
[49, 51], and one compared results for convergence between
members of the research team [53]. Thematic analysis tech-
niques and quality controls were not clearly identified in
the case study [47]. Authors documented challenges with
recruitment which impacted on qualitative study designs.
Difficulties identifying participants prevented the research-
ers from being able to conduct prospective research with
pregnant women [49], and prompted case study research
when larger samples could not be found [47]. Inclusion cri-
teria limits on how recently participants had given birth were
modified to obtain larger samples, reducing the potential
quality of information obtained with the inclusion of par-
ticipants whose experiences were over 20 years earlier [51].
Discussion
This systematic review was undertaken to summarize what
is known about sensory and body change issues for autistic
women during pregnancy and birth. Two questions guided
the interrogation of literature and are addressed below.
13
308
What are the pregnancy challenges for autistic
women?
The evidence synthesised in this review suggests that
autistic women face sensory difficulties associated with
pregnancy and birth experiences, including sensory chal-
lenges due to healthcare settings, and increased sensitivi-
ties during pregnancy. Sensory challenges associated with
healthcare environments and interactions (including hos-
pital sounds, lighting, and physical contact from health
practitioners) were reported in the most depth, likely due
to the nursing orientation of the majority of the literature.
These findings are consistent with research demonstrat-
ing medical environments are a source of sensory stress
for many autistic adults [55], but may be compounded
for pregnant women, given reports of heightened sensory
sensitivities during pregnancy. Heightened sensitivities
were reported in each of the papers which studied the
pregnancy period, and included both exacerbation of
existing sensitivities, and new sensitivities. Although
preliminary, the findings are consistent with research,
demonstrating that autistic women can experience ampli-
fication of existing sensory challenges and the emergence
of new sensitivities during menstruation and menopausal
transition [29, 30]. Participants in these studies report
that increased sensory challenges impact greatly on their
adaptive functioning, emotional well-being, coping skills,
and social communication, resulting in overwhelmingly
negative experiences including ‘meltdowns’ in the context
of sensory stressors. Another potential challenge, while
only reported in one study, suggests some women may
experience sensory challenges associated with fetal move-
ment [53]. It is unclear the extent to which participants
experienced sensory challenges associated with body
changes in pregnancy, as the included studies placed lit-
tle emphasis on sensory experiences outside of healthcare
settings. We do not yet know the full range of effects
pregnancy may have on sensory experiences for autis-
tic women, nor the associated functional and emotional
impacts, but this emerging body of evidence leads us to
believe that there could be significant implications for
the well-being of women with autism and their children.
In addition to these sensory challenges, autistic women
experience further challenges associated with features of
ASD, including communication difficulties when inter-
acting with health professionals, a lack of appropriate
information and supports, and distress due to a perceived
lack of control during labour. We suggest that each of
these stressors has negative implications for the mental
well-being and emotional state of women during preg-
nancy and birth.
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Adjustments of healthcare practice for autism
Our findings suggest that autistic women have specialised
needs during pregnancy and childbirth. There is evidence
of increasing awareness of this issue in nursing and mid-
wifery fields [56], although the lack of practice guidelines
has been noted [57]. Where recommendations do exist, they
are based on what is known about ASD generally, due to
a lack of research specifically investigating the pregnancy
experiences of autistic women [58]. Increased understand-
ing and awareness of sensory and communication issues in
maternity environments could lead to environmental modi-
fications such as those which have been trialled in paediatric
settings [59], and increased training for practitioners around
communicating with autistic individuals [60]. Further
research is required to understand which aspects of preg-
nancy information and services do not meet the needs of
autistic women [50], so that these resources can be adapted
where appropriate.
Understanding the impact of sensory experiences that
pregnant autistic women experience outside of healthcare
environments is also important. Stress and anxiety associ-
ated with amplified sensory challenges are likely to impact
on women’s coping throughout the already challenging
period of pregnancy. This is of concern given the well-doc-
umented relationships between increased psychosocial stress
during pregnancy and poorer infant outcomes, in particular
pre-term birth and low birthweights [61, 62]. It is essential
for clinicians to be aware of any increases in sensory stress
associated with pregnancy and the impacts of these on psy-
chological well-being to support women to access relevant
services. This is of particular consequence given the high
risk for anxiety and depression in autistic populations [63],
which may be reflected in the elevated rates of antenatal and
postnatal depression identified by Pohl et al. [52]. Women
who belong to multiple marginalised groups may be at even
greater risk to their mental health [64] and poor birth out-
comes [65].
The high prevalence of autism means that health practi-
tioners will come into regular contact with autistic women,
but the greater recognition of a female ASD profile [16]
increases the likelihood that these women will present with
an established diagnosis. However, one challenge for health
practice is that many women may be unwilling to disclose
a diagnosis of autism to health professionals. Seventy-five
percent of participants in Lum et al. [50] reported frequently
experiencing negative responses from healthcare profession-
als when disclosing their diagnosis, while 40% of partici-
pants in Pohl et al. [52] reported rarely or never disclosing
ASD diagnoses to health professionals. Reasons for non-
disclosure include concerns that disclosure would change
health professionals' attitudes towards them [52], or impact
on treatment or communication [50]. Health practitioners
Archives of Gynecology and Obstetrics (2022) 305:299–311
may be able to address this by questioning whether patients
experience any sensory sensitivities, and if so, what chal-
lenges these present for the individual. If relevant, women
could subsequently be asked in a non-judgemental manner
whether they identify with any neurodiverse diagnoses. Mid-
wives and obstetricians are likely to benefit from access to
professional development that addresses recognition and
understanding of autism symptoms and how to adapt prac-
tice accordingly. However, resources of this nature do not yet
exist, and require development to assist health practitioners
to respond to presentations consistent with autism, (such as
social-communication differences and signs of discomfort
which may be associated with sensory sensitivities), and
support both diagnosed and undiagnosed autistic women
through their pregnancy and birth.
Limitations and future directions
This review is restricted by the small amount of litera-
ture addressing pregnancy in autistic women. The studies
reviewed are exploratory, addressing a number of broader
experiences in addition to pregnancy, with a limited focus
on the area of sensory issues during pregnancy which was
the primary interest of this review. The preliminary nature
of this body of research and the absence of quantitative data
addressing sensory experiences during pregnancy reflect
the paucity of literature addressing women’s experiences of
autism. The quantitative literature was limited by low sta-
tistical power, and significant heterogeneity in the outcomes
studied and methodologies used was noted across all studies.
Researchers reported challenges in recruiting women who
were pregnant at the time of research or whose experiences
of pregnancy were recent. As a result, the weight of evi-
dence synthesised here is derived from retrospective stud-
ies involving small samples which, in some cases, required
participants to recall experiences that occurred decades ear-
lier. Perhaps closer collaboration with ASD support groups
would provide greater opportunity for stakeholder input
into research direction, and prospective recruitment; both of
which would increase the validity and acuity of the research
findings. Qualitative data primarily captured the experiences
of white women in western countries, limiting the generalis-
ability of the findings. While every effort was made to locate
all research on the topic, the search terms were constructed
around experiences of pregnancy for women on the autism
spectrum. It is possible that literature with a primary focus
on sensory experiences in ASD but included discussion of
pregnancy experiences as a minor focus may not have been
captured by the search.
Further research in this area, while potentially challeng-
ing, will have important clinical and research implications.
Particular areas that need to be investigated include devel-
oping an understanding of the sensory challenges which
309
autistic women experience in association with body changes
in pregnancy and fetal movement, the functional and emo-
tional impacts of heightened sensory experiences during
pregnancy, the proportion of autistic women who experience
sensory difficulties associated with pregnancy, and how sen-
sory experiences differ for women across trimesters. Increas-
ing our knowledge of how pregnancy intersects with autistic
presentations may also inform the care needs of individu-
als with other neurodiverse diagnoses (such as ADHD), in
which sensory sensitivities can also be experienced.
Understanding the challenges faced by this population
will improve health practitioner capacity to support the men-
tal and physical well-being of autistic women, and may have
implications for pregnancy outcomes [66]. Many healthcare
professionals have a limited understanding of how autism
presents in adults, and implications for healthcare practice
[67, 68]. Furthering research which assesses the existing
knowledge of healthcare professionals might identify key
gaps in knowledge and provide insights that can inform pro-
fessional development and training programs. In spite of its
limitations, this review indicates that autistic women expe-
rience unique challenges during pregnancy related to sen-
sory sensitivities, communication in healthcare settings, and
pregnancy information and supports. Future research direc-
tions should include quantitative and qualitative approaches
to prospectively investigate the nature of sensory experi-
ences throughout the pregnancy period and associated emo-
tional and functional impacts, and examine the proportion
of autistic women who are impacted by these experiences.
Research should also continue to work with autistic mothers’
experience with pre-natal information and supports, to better
meet the needs of autistic women.
Author Contribution PS: project conception and development, data
collection and management, data analysis, and manuscript preparation.
RYY: data collection and management, data analysis, and manuscript
writing/editing. MHo: project conception and development, data analy-
sis, and manuscript preparation. MHi: manuscript preparation. MAS:
project conception and development, data analysis, and manuscript
preparation.
Funding No funds, grants, or other support was received.
Declarations
Conflict of interest Priscilla Samuel, Rui Ying Yew, Merrilyn Hooley,
Martha Hickey, and Mark A. Stokes declare that they have no conflict
of interest.
References
1. American Psychiatric Association (2013) Diagnostic and statisti-
cal manual of mental disorders, 5th edn. APA, Washington, DC
13
310
2. Kenny L, Hattersley C, Molins B, Buckley C, Povey C, Pel-
licano E (2015) Which terms should be used to describe
autism? Perspectives from the UK autism community. Autism
20(4):442–462. https://​doi.​org/​10.​1177/​13623​61315​588200
3. Bury SM, Jellett R, Spoor JR, Hedley D (2020) “It Defines Who
I Am” or “It’s Something I Have”: what language do [autistic]
Australian adults [on the autism spectrum] prefer? J Autism Dev
Disord 2000:1–11
4. O’Neill M, Jones RS (1997) Sensory-perceptual abnormali-
ties in autism: a case for more research? J Autism Dev Disord
27(3):283–293
5. Tavassoli T, Miller LJ, Schoen SA, Nielsen DM, Baron-Cohen
S (2014) Sensory over-responsivity in adults with autism spec-
trum conditions. Autism 18(4):428–432
6. Crane L, Goddard L, Pring L (2009) Sensory processing in
adults with autism spectrum disorders. Autism 13(3):215–228
7. Ben-Sasson A, Hen L, Fluss R, Cermak SA, Engel-Yeger B,
Gal E (2009) A meta-analysis of sensory modulation symptoms
in individuals with autism spectrum disorders. J Autism Dev
Disord 39(1):1–11
8. DuBois D, Ameis SH, Lai M-C, Casanova MF, Desarkar P
(2016) Interoception in autism spectrum disorder: a review. Int
J Dev Neurosci 52:104–111
9. Failla MD, Moana-Filho EJ, Essick GK, Baranek GT, Rog-
ers BP, Cascio CJ (2018) Initially intact neural responses to
pain in autism are diminished during sustained pain. Autism
22(6):669–683
10. Leekam SR, Nieto C, Libby SJ, Wing L, Gould J (2007) Describ-
ing the sensory abnormalities of children and adults with autism.
J Autism Dev Disord 37(5):894–910
11. South M, Rodgers J (2017) Sensory, emotional and cognitive con-
tributions to anxiety in autism spectrum disorders. Front Hum
Neurosci 11:20
12. Hwang YI, Arnold S, Srasuebkul P, Trollor J (2020) Understand-
ing anxiety in adults on the autism spectrum: an investigation of
its relationship with intolerance of uncertainty, sensory sensitivi-
ties and repetitive behaviours. Autism 24(2):411–422
13. Kinnealey M, Oliver B, Wilbarger P (1995) A phenomenologi-
cal study of sensory defensiveness in adults. Am J Occup Ther
49(5):444–451
14. Pellicano E, Dinsmore A, Charman T (2014) What should autism
research focus upon? Community views and priorities from the
United Kingdom. Autism 18(7):756–770
15. Maenner MJ (2020) Prevalence of autism spectrum disorder
among children aged 8 years—autism and developmental disabili-
ties monitoring network, 11 Sites, United States, 2016. MMWR
Surveillance Summaries 69
16. Loomes R, Hull L, Mandy WPL (2017) What is the male-to-
female ratio in autism spectrum disorder? A systematic review
and meta-analysis. J Am Acad Child Adolesc Psychiatry
56(6):466–474
17. Allely CS (2019) Understanding and recognising the female phe-
notype of autism spectrum disorder and the “camouflage” hypoth-
esis: a systematic PRISMA review. Adv Autism 5(1):14–37.
https://​doi.​org/​10.​1108/​AIA-​09-​2018-​0036
18. Lai M-C, Lombardo MV, Auyeung B, Chakrabarti B, Baron-
Cohen S (2015) Sex/gender differences and autism: setting the
scene for future research. J Am Acad Child Adolesc Psychiatry
54(1):11–24
19. Green RM, Travers AM, Howe Y, McDougle CJ (2019) Women
and autism spectrum disorder: diagnosis and implications for
treatment of adolescents and adults. Curr Psychiatry Rep 21(4):22
20. Watkins EE, Zimmermann ZJ, Poling A (2014) The gender of
participants in published research involving people with autism
spectrum disorders. Res Autism Spectrum Disord 8(2):143–146.
https://​doi.​org/​10.​1016/j.​rasd.​2013.​10.​010
13
Archives of Gynecology and Obstetrics (2022) 305:299–311
21. Philip RCM, Dauvermann MR, Whalley HC, Baynham K, Lawrie
SM, Stanfield AC (2012) A systematic review and meta-analysis
of the fMRI investigation of autism spectrum disorders. Neurosci
Biobehav Rev 36(2):901–942. https://d​ oi.o​ rg/1​ 0.1​ 016/j.n​ eubio​ rev.​
2011.​10.​008
22. Halladay AK, Bishop S, Constantino JN, Daniels AM, Koenig
K, Palmer K, Messinger D, Pelphrey K, Sanders SJ, Singer AT
(2015) Sex and gender differences in autism spectrum disorder:
summarizing evidence gaps and identifying emerging areas of
priority. Mol Autism 1(6):1–5
23. Taylor E, Holt R, Tavassoli T, Ashwin C, Baron-Cohen S (2020)
Revised scored Sensory Perception Quotient reveals sensory
hypersensitivity in women with autism. Mol Autism 11(1):1–13
24. Lai M-C, Lombardo MV, Pasco G, Ruigrok AN, Wheelwright
SJ, Sadek SA, Chakrabarti B, Baron-Cohen S (2011) A behavio-
ral comparison of male and female adults with high functioning
autism spectrum conditions. PLoS ONE 6(6):e20835
25. Moseley RL, Hitchiner R, Kirkby JA (2018) Self-reported sex dif-
ferences in high-functioning adults with autism: a meta-analysis.
Mol Autism 9(1):33
26. Hamilton A, Marshal MP, Murray PJ (2011) Autism spectrum
disorders and menstruation. J Adolesc Health 49(4):443–445
27. Burke LM, Kalpakjian CZ, Smith YR, Quint EH (2010) Gyneco-
logic issues of adolescents with Down syndrome, autism, and
cerebral palsy. J Pediatr Adolesc Gynecol 23(1):11–15
28. Obaydi H, Puri B (2008) Prevalence of premenstrual syndrome
in autism: a prospective observer-rated study. J Int Med Res
36(2):268–272
29. Steward R, Crane L, Roy EM, Remington A, Pellicano E
(2018) “Life is much more difficult to manage during periods”:
autistic experiences of menstruation. J Autism Dev Disord
48(12):4287–4292
30. Moseley RL, Druce T, Turner-Cobb JM (2020) “When my autism
broke”: A qualitative study spotlighting autistic voices on meno-
pause. Autism. https://​doi.​org/​10.​1177/​13623​61319​901184
31. Kamysheva E, Wertheim EH, Skouteris H, Paxton SJ, Milgrom
J (2009) Frequency, severity, and effect on life of physical symp-
toms experienced during pregnancy. J Midwifery Womens Health
54(1):43–49
32. Nazik E, Eryilmaz G (2014) Incidence of pregnancy-related dis-
comforts and management approaches to relieve them among
pregnant women. J Clin Nurs 23(11–12):1736–1750
33. Beebe KR, Gay CL, Richoux SE, Lee KA (2017) Symptom
experience in late pregnancy. J Obstet Gynecol Neonatal Nurs
46(4):508–520
34. Wadephul F, Glover L, Jomeen J (2019) Conceptualising women’s
perinatal well-being: a systematic review of theoretical discus-
sions. Midwifery 81:102598
35. Cameron EL (2014) Pregnancy and olfaction: a review. Front Psy-
chol 5:67
36. Faas MM, Melgert BN, de Vos P (2010) A brief review on how
pregnancy and sex hormones interfere with taste and food intake.
Chemosens Percept 3(1):51–56
37. Weenen H, Olsen A, Nanou E, Moreau E, Nambiar S, Vereijken C,
Muhardi L (2019) Changes in taste threshold, perceived intensity,
liking, and preference in pregnant women: a literature review.
Chemosens Percept 12(1):1–17
38. Choo E, Dando R (2017) The impact of pregnancy on taste func-
tion. Chem Senses 42(4):279–286
39. Robledo J, Donnellan A, Strandt-Conroy K (2012) An explora-
tion of sensory and movement differences from the perspective of
individuals with autism. Front Integrat Neurosci. https://​doi.​org/​
10.​3389/​fnint.​2012.​00107
40. Elwin M, Ek L, Schröder A, Kjellin L (2012) Autobiographical
accounts of sensing in Asperger syndrome and high-functioning
autism. Arch Psychiatr Nurs 26(5):420–429
Archives of Gynecology and Obstetrics (2022) 305:299–311
41. Hodgkinson EL, Smith DM, Wittkowski A (2014) Women’s
experiences of their pregnancy and postpartum body image: a
systematic review and meta-synthesis. BMC Pregnancy Childbirth
14(1):330
42. Talmon A, Ginzburg K (2018) “Who does this body belong to?”
The development and psychometric evaluation of the Body Expe-
rience during Pregnancy Scale. Body Image 26:19–28
43. DiPietro JA, Ghera MM, Costigan K, Hawkins M (2004) Measur-
ing the ups and downs of pregnancy stress. J Psychosom Obstet
Gynecol 25(3–4):189–201
44. Malm M-C, Hildingsson I, Rubertsson C, Rådestad I, Lindgren H
(2016) Prenatal attachment and its association with foetal move-
ment during pregnancy: a population based survey. Women Birth
29(6):482–486
45. Downes MJ, Brennan ML, Williams HC, Dean RS (2016) Devel-
opment of a critical appraisal tool to assess the quality of cross-
sectional studies (AXIS). BMJ Open 6(12):e011458. https://​doi.​
org/​10.​1136/​bmjop​en-​2016-​011458
46. Critical Appraisal Skills Programme (2018) CASP Qualitative
Checklist. https://​casp-​uk.​net/​casp-​tools-​check​lists/. Accessed 23
May 2020
47. Rogers C, Lepherd L, Ganguly R, Jacob-Rogers S (2017) Peri-
natal issues for women with high functioning autism spectrum
disorder. Women Birth 30(2):e89–e95. https://​doi.​org/​10.​1016/j.​
wombi.​2016.​09.​009
48. Center for Evidence Based Management (2014) Critical Appraisal
Checklist for a Case Study. https://​www.​cebma.​org. Accessed 23
May 2020
49. Burton T (2016) Exploring the experiences of pregnancy, birth
and parenting of mothers with autism spectrum disorder. D.Clin.
Psy., Staffordshire University (United Kingdom), Ann Arbor
50. Lum M, Garnett M, O’Connor E (2014) Health communication:
a pilot study comparing perceptions of women with and without
high functioning autism spectrum disorder. Res Autism Spect Dis-
ord 8(12):1713–1721. https://​doi.​org/​10.​1016/j.​rasd.​2014.​09.​009
51. Donovan J (2020) Childbirth experiences of women with autism
spectrum disorder in an acute care setting. Nurs Womens Health
24(3):165–174. https://​doi.​org/​10.​1016/j.​nwh.​2020.​04.​001
52. Pohl AL, Crockford SK, Blakemore M, Allison C, Baron-Cohen S
(2020) A comparative study of autistic and non-autistic women’s
experience of motherhood. Mol Autism 11(1):3. https://​doi.​org/​
10.​1186/​s13229-​019-​0304-2
53. Gardner M, Suplee PD, Bloch J, Lecks K (2016) Exploratory
study of childbearing experiences of women with Asperger syn-
drome. Nurs Womens Health 20(1):28–37. https://​doi.​org/​10.​
1016/j.​nwh.​2015.​12.​001
54. Booth T, Murray AL, McKenzie K, Kuenssberg R, O’Donnell
M, Burnett H (2013) Brief report: an evaluation of the AQ-10
as a brief screening instrument for ASD in adults. J Autism Dev
Disord 43(12):2997–3000
55. Raymaker DM, McDonald KE, Ashkenazy E, Gerrity M, Baggs
AM, Kripke C, Hourston S, Nicolaidis C (2016) Barriers to
healthcare: instrument development and comparison between
autistic adults and adults with and without other disabilities.
311
Autism 21(8):972–984. https://​doi.​org/​10.​1177/​13623​61316​
661261
56. Turner L (2017) Supporting women with autism during preg-
nancy, birth and beyond. Am Nurse 27(4):462–466
57. Taylor M (2014) Caring for a woman with autism in early labour.
Br J Midwif 22(7):514–518
58. Bloch JR, Lecks KJ, Suplee PD (2012) Caring for women with
Asperger’s syndrome during the childbearing cycle. Nursing of
autism spectrum disorder: evidence-based integrative care across
the lifespan. Springer, New York, pp 265–291
59. Wood EB, Halverson A, Harrison G, Rosenkranz A (2019) Creat-
ing a sensory-friendly pediatric emergency department. J Emerg
Nurs 45(4):415–424
60. Nicolaidis C, Raymaker DM, Ashkenazy E, McDonald KE,
Dern S, Baggs AEV, Kapp SK, Weiner M, Boisclair WC (2015)
“Respect the way I need to communicate with you”: healthcare
experiences of adults on the autism spectrum. Autism 19(7):824–
831. https://​doi.​org/​10.​1177/​13623​61315​576221
61. Hobel CJ, Goldstein A, Barrett ES (2008) Psychosocial stress and
pregnancy outcome. Clin Obstet Gynecol 51(2):333–348. https://​
doi.​org/​10.​1097/​GRF.​0b013​e3181​6f2709
62. Dunkel Schetter C (2011) Psychological science on pregnancy:
stress processes, biopsychosocial models, and emerging research
issues. Annu Rev Psychol 62:531–558
63. Hollocks MJ, Lerh JW, Magiati I, Meiser-Stedman R, Brugha TS
(2019) Anxiety and depression in adults with autism spectrum
disorder: a systematic review and meta-analysis. Psychol Med
49(4):559–572. https://​doi.​org/​10.​1017/​S0033​29171​80022​83
64. George R, Stokes MA (2018) A quantitative analysis of men-
tal health among sexual and gender minority groups in ASD. J
Autism Dev Disord 48(6):2052–2063
65. Koning SM, Ehrenthal DB (2019) Stressor landscapes, birth
weight, and prematurity at the intersection of race and income:
elucidating birth contexts through patterned life events. SSM
Popul Health 8:100460. https://​doi.​org/​10.​1016/j.​ssmph.​2019.​
100460
66. Sundelin HE, Stephansson O, Hultman CM, Ludvigsson JF (2018)
Pregnancy outcomes in women with autism: a nationwide popu-
lation-based cohort study. Clin Epidemiol 10:1817–1826. https://​
doi.​org/​10.​2147/​CLEP.​S1769​10
67. Zerbo O, Massolo ML, Qian Y, Croen LA (2015) A study of phy-
sician knowledge and experience with autism in adults in a large
integrated healthcare system. J Autism Dev Disord 45(12):4002–
4014. https://​doi.​org/​10.​1007/​s10803-​015-​2579-2
68. Bruder MB, Kerins G, Mazzarella C, Sims J, Stein N (2012) Brief
report: the medical care of adults with autism spectrum disorders:
Identifying the needs. J Autism Dev Disord 42(11):2498–2504
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